With a quest of strength for her son born too soon.

Up and Down, repeat often

That would be our world. One moment is filled with much gleam and the next brings disappointment. I most recently discussed Simon’s success with spoon feeding. The joys were short-lived.

Simon has had another ear infection. This is his third in six months. One more in the next couple of months means tubes. We’ll see how this goes. Having tubes, the surgery itself, is simple and short; lasting approximately 5-10 minutes. Anesthesia, however would be the problem. We would probably require a trip to Denver Children’s Hospital as the anesthesiologists here would be leery to work on Simon as he’s oxygen dependent.

Another downfall to this most recent ear infection has been Simon’s regressions in eating. By the time he was given antibiotics, he was back down to taking only 2-3 ounce bottles with each sitting. Spoon feeding was out of the question, though it was offered. He’s finally starting to take 4-5 ounce bottles again. Perhaps solids will kick back up and into his regular routine as the weeks move forward.

Our two goals for Simon for this summer were successfully reintroducing solids and weaning him off oxygen. At his appointment on Tuesday, we discussed both of those goals. Dr. Leland and I are fairly certain that Simon will do okay with solids, though oxygen is a different subject all together.

As of late, Simon has been desaturating during the night. His oxygen requirements have increased, too. We are currently utilizing a few different liters throughout the day. It could be another year before Simon will be truly ready to come off oxygen permanently.

We were quite disappointed to hear the news, but somewhere deep down, I knew that would probably be the case. Simon went from 1/32 of a Liter up to 1/8 and now we are regularly sitting at 1/4L. Any time he gets any kind of bug, it wipes out all of his reserves and we have to start from scratch again.

It’s going to be a long process for Simon. We knew that going into our journey with a preemie, and that hasn’t changed yet. Simon will see Dr. Leland again at the end of the month for his 12 month appointment and follow up.

I am so sorry that you guys are going backwards and then forward and then back. It sucks but you and Simon are 2 of the strongest people I know. You have fought through a lot to get to where you are. He will get back to where he was and beyond that. I am here for you if you need me.